What the HHT?

A blog for the HHT community

Blog

Keeping it in the Family

Hello Cure HHT community. I’m Janice Lee Jones, originally from San Jose, CA. I’m a 46-year-old woman who has been dealing with HHT unknowingly for 34 years; and knowingly for the past 12 years. My faith in Christ is what has kept me, and I excitedly look forward to a cure for HHT and the…

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For My Aunt Edie

I am a wife, I am a mother, I am a daughter, I am a sister, I am a niece, I am a person affected by HHT and am passionate about the cause!  I am focusing on HHT awareness today. No one is ever quite prepared for the loss of a loved one, especially if…

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We Are Never Alone

June was HHT awareness month. The zeal to help those who may not know they have the disease was amazing. I read every letter and blog; “liked” the sentiments and banners on social media; and cheered for those running and walking for the cause. But there are other facets of what awareness brings that aren’t…

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Losing My Dog, Teddy

my dog teddy

Just after I learned I might have HHT, my family and I moved from the Boston area to Atlanta. Emory University Hospital was where I had my first PAVM embolization in 1993.  The projected two hour operation extended to just over four hours, but was pronounced successful, so we were pleased. The PAVM was coiled…

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Keep the Hope, Keep the Faith

Tania Competiello

Allow me to introduce myself as I begin to write about my personal journey with HHT and how I arrived at where I am today: My name is Tania Competiello, I am 39 years old of Portuguese descent. I was born and raised in Portugal until the age of 11, when my family immigrated to…

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